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A kaleidoscope of well-being to represent the participation in recreational activities of children and young people with complex cerebral palsy.

Pickering, Dawn, Gill, Paul and Reagon, Carly 2022. A kaleidoscope of well-being to represent the participation in recreational activities of children and young people with complex cerebral palsy. Presented at: Combined 11th Australasia Academy of Cerebral Palsy and Developmental Medicine and the 3rd International Alliance of Academies of Childhood Disabilities Conference ‘BETTER TOGETHER’, Online, 1-5th March 2022.

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A literature review highlighted a gap in knowledge for non-verbal disabled children with limited mobility who have less choices for recreational activities than their peers. Very little is known about their perceptions of their own well-being. The research question explored how children and young people with cerebral palsy and their parents viewed, experienced, and chose their level of participation in recreational activities, to benefit their well-being. This was explored by observing their experiences, intentional behaviours and listening to their parent’s views. Positioning theory was applied, which includes a triad of their position, social forces, and their storylines. The opportunity to position the disabled child or young person at a recreational activity was a key to their storylines. A comparative case study design was developed using visual methods. The storylines of the participants were socially constructed from the evidence of the social forces at play, at the activities where they were positioned. There were two groups, a Participatory Group (N=4) and a Limited Participatory Group (N=3). The participants were aged nine to sixteen years, supported by their parents in the data collection. Each case included two interviews at the beginning and end of twelve weeks, during which time the parents also kept a diary. Observations were also carried out at one of their usual recreational activities during this time. Photographs were taken by the parent or the researcher, which were used to elicit discussion in the second interview. Seven cases were analysed utilising an interpretative approach, using Braun and Clark’s six stages of thematic analysis. First the Participatory Group were analysed, then the Limited Participatory Group, followed by the across case analysis. Three overall themes were identified from the findings 1. Participation enhancers 2. Champions for disabled children and young people's well-being 3.Hindrances to participation. Positioning theory has been further adapted to include the non-verbal children’s storylines, represented by a ‘Kaleidoscope of Well-being’. This suggests that well-being can fluctuate in different environments, influenced by the social forces of advocates who promoted their needs, with specialist equipment. Participants also showed they could choose not to participate, to determine their own storylines, by self-advocating their wishes. Policy makers and designers should consider how to increase the choices of recreational activities for disabled children. Practitioners should consider how they include participation as an outcome from their interventions. Further research could explore how professionals listen to disabled children and young people to promote their self-advocacy.

Item Type: Conference or Workshop Item (Poster)
Status: Unpublished
Schools: Healthcare Sciences
Subjects: R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
Funders: Chartered Society of Physiotherapy Charitable Trust
Last Modified: 30 Apr 2022 15:38

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